ARVs and treatment literacy

People taking antiretroviral (ARV) drugs and their supporters need to understand new and complex ideas around drugs, side effects, nutrition and positive living. Treatment literacy aims to help individuals and communities understand why ARV treatment is needed, and what it can and cannot do. Effective treatment literacy, developed by or with people living with HIV and AIDS and those taking ART, can lead to improved health outcomes, better adherence to drug regimes and higher uptake of voluntary counselling and testing. Current resources and community capacity to understand and support antiretroviral therapy (ART) are not sufficient.

The resources in this list demonstrate the need for treatment literacy, effective communication and preparing communities around ARVs. They include examples of work already underway to strengthen responses to the situation that ARVs present. This list accompanies a Findings paper on treatment literacy available at www.healthlink.org.uk.

Selected resources

Discussion and analysis

This edition looks at access to treatment, considering the practical and attitudinal barriers to treatment that exist for people living with HIV. As part of a process to develop a toolkit to help NGOs and others understand and find ways to overcome these obstacles, the Alliance has carried out assessments of the issues around access to treatment in Ivory Coast, India and Zambia. There is also an article about a home care project in Cambodia which looks at the ways in which home care can significantly contribute to improving access to treatment. There are also findings from the access to treatment needs assessments in the different countries

This powerpoint presentation presents issues raised by research on treatment literacy. The main points are adherence, positive living (including nutrition), detailed and technical descriptions of side effects, detailed and technical information about CD4 counts, viral loads, risks within first 100 days, resistance and re-infection. It includes some interesting quotes from people living with HIV and AIDS who are taking treatment

This case study outlines and assesses the Khayelitha programme, which focused on ART provision and aimed to document the feasibility of low-cost treatment and primary health care provision in developing countries. The document details the clinical outcomes of the programmes, the strategy used to ensure adherence and the contribution made by Treatment Action Campaign (TAC) to raise awareness and pressurise the government to develop an adequate response to the epidemic. The provision of ART in Khayelitsha had also a positive impact on prevention, making more HIV-positive people aware of their status, reducing stigma, being the catalyst of educational initiatives, improving the morale of health workers and keeping families intact and less at risk. The case study concludes with a comprehensive list of lessons learned and with key recommendations for the future, which include consolidation of nurse-based care, more training activities, integration of HIV/AIDS and TB services, educational programmes aimed at improving adherence to ART and a greater focus on paediatric AIDS and ART provision in rural remote areas

This is a report detailing the main themes that emerged from research in Zambia testing the effect of a package of community education and referral interventions to expand health and ARV literacy, achieve better health-seeking behaviour, improve equity of access, boost ARV adherence and improve prevention for people with HIV. In Zambia, the ARV treatment programme in public health institutions has started scale-up, aiming as a first goal to reach 10,000 people. Zambia's central board of health (CBoH) commissioned an operations research project through the Alliance and Horizons. The research sought to understand how health seeking behaviour, particularly for VCT, adherence to ARV treatment, prevention for people with HIV and equity of access to ART treatment programmes can be improved. Eleven themes emerged from these in-depth interviews and form the main body of the report. Information needs and misinformation about HIV/AIDS and ARVs cross-cut most themes. Key actions to support improvements in policy and advocacy in support of people living with HIV in Zambia are listed at the end

This article argues that the provision of ARV treatment can be best achieved through strengthening existing public health systems. This requires leadership, capacity development and partnerships between government and civil society. In most settings the public health system is not well prepared to undertake the ambitious challenge of ARV treatment. The article covers some of the possible pitfalls that the rapid implementation of a large scale ARV programme may have and considers seven main lessons learnt from other large scale health programmes such as the Integrated Management of Childhood Illnesses (IMCI) and tuberculosis (TB). Finally, there are some points about how to avoid the pitfalls and set up appropriate and realistic mechanisms and activities to strengthen the planning and management capacity of national ministries. This will help to ensure synergy between ARV programmes and policies and plans for the comprehensive development of health systems

This publication is aimed at governments, development partners, and public and private health facilities seeking to provide ART as part of comprehensive care and support for people living with HIV and AIDS. It describes valuable lessons learned from several ART learning sites throughout Ghana, Kenya and Rwanda. By the end of April 2005, more than 5,800 new patients had initiated ART through this treatment and care initiative. Strategies, challenges and key recommendations are presented and comments by national and community leaders, providers and patients appear throughout the text to give readers a sense of the programs as they progressed. The lessons may not have direct relevance to all health facilities providing or planning to provide ART; it should be used or adapted depending on the epidemiological, political, social, cultural and economic context of each setting

Issue 2 of id21's Insights Health was entitled 'Delivering the goods - HIV treatment for the poor'. It presented new research from key contributors on anti-retroviral (ARV) drug delivery in developing countries. After it was published, a wide range of stakeholders participated in an email discussion. Participants were based in many different countries and included international and national policy-makers, health professionals, representatives of non-governmental and community based organizations and researchers. This is a summary of the email discussion looking at best strategies for HIV treatment delivery in developing countries, which barriers prevent poor people from accessing care, and the role of the international development community. The debate covered a broad range of topics but particularly focused on HIV treatment as a priority relative to other health and development issues, strategies for delivering treatment in resource-poor settings, the role and operation of the new Global Fund to Fight AIDS, TB and malaria and stigma as a barrier to access

This UNAIDS Best Practice Collection document aims to highlight and advocate for the work of civil society, community based organisations in particular, in responding to the AIDS epidemic in Africa. The paper describes a ground breaking survey by Sidaction, a Paris based treatment rights group, which supports community responses to AIDS in low and middle income countries. In 2004, Sidaction, in cooperation with the UNAIDS secretariat and WHO mapped treatment and care efforts by community based organisations in Africa. Many community based organisations are already dispensing ARVs on a significant scale. The survey confirmed that community efforts to provide treatment represent an important opportunity to enrol more people in antiretroviral therapy. To seize this opportunity, national governments and the international community need to quickly provide support to expand the coverage and impact of community based treatment. The aim is for CBOs to work closely with the public sector so that each reinforces the efforts of the other

The expansion of access to ART is significantly improving the lives of people living with HIV and the wellbeing of communities affected by the epidemic. However, stigmatization and discrimination and poor adherence threaten to weaken the full potential of drug treatment and medical care. This paper looks at the contribution that treatment education can make to maximise the impact of greater ART accessibility and improved care provision. It takes a wide-ranging approach to education, which should include treatment literacy, advocacy and community mobilisation. It takes the view that treatment preparedness can only be achieved through the full involvement of people living with HIV/AIDS. An effective strategy will also rely on inter-sectoral collaboration between governments, the education sector, civil society and development organizations. It argues that the success of interventions will depend on their gender-responsiveness, and in their ability to adopt participatory and interactive methods, targeting different groups and settings in a culturally sensitive manner

This is a report on a technical consultation on treatment education held in Paris November 22-23, 2005, which aimed to assess the current state of HIV treatment literacy and community preparedness, identify needs and recommend strategies for the future. The effectiveness of antiretroviral therapy (ART) and medical care relies on timely HIV testing and treatment adherence. Treatment education interventions addressing issues of stigma and complacency, have been shown to contribute to a wider uptake of testing services and to improve adherence to ART. The report calls for an integrated and synergetic collaboration between all stakeholders, including people with HIV, and for the adoption of a participatory, person-centred approach. It also acknowledges that while there is a wealth of initiatives aimed at improving community preparedness, there is also a need to scale up programmes that have shown to work. The report concludes with a number of key recommendations for future activities. Those include: providing support to partnership and inter-sectoral collaborations; integrating treatment education across HIV education programmes and health systems; differentiating and customising approaches according to settings and audiences; involving affected communities and individuals; monitoring and evaluating treatment education initiatives

The ITPC is a global alliance of over 600 treatment activists that include people living with HIV and AIDS and their advocates. This report is the first systematic assessment of treatment scale up based on the research of people living in communities in six countries where the epidemic has hit the hardest - the Dominican Republic, India, Kenya, Nigeria, Russia and South Africa. The report is based on their experiences and first-hand knowledge of the situation on the ground. Each country used a case study methodology, emphasising interviews with key informants. The report identifies barriers that could prevent efforts to make treatment more widely available and makes concrete recommendations for governments and international institutions

This report summarises the findings of two community consultations carried out in Zambia. It amalgamates the two separate reports originally published on the Alliance website as "Voices from the community" (November 2002) and "Voices from rural communities" (May 2003). The two consultations aimed to learn about individual and community perceptions, knowledge and experiences of HIV/AIDS and related treatment. This included questions on ARV treatment and the importance and scope of the involvement of people with HIV and their communities in planning and implementing treatment programmes. The consultations were carried out by multi-disciplinary teams, used participatory methods and involved a wide variety of community members, including people with HIV, local leaders and health workers. The community consultations showed that for communities to realise their potential as a valuable resource for ART treatment, people need information and education as well as effective clinical care and support

Antiretroviral (ARV) treatment is becoming more accessible to a growing number of people living with HIV in Africa. Community engagement for ARV treatment includes educating those taking ARV medication, working with service providers, involving people living with HIV and strengthening community mechanisms to support and promote adherence, prevention and stigma reduction. This manual was produced with the understanding that partnerships with HIV and AIDS affected communities, especially people living with HIV themselves, will help to improve health-seeking behaviour, acceptance of ARV treatment and the extent to which barriers to care and treatment, such as stigma and discrimination, are reduced or eliminated. Many NGOs and CBOs need to learn more about ARV treatment and what it involves for people living with HIV and the broader community, and the Alliance decided to design an ARV training course targeted primarily at NGO and CBO staff and volunteers. This manual can be used by CBOs and NGOs in training activities. The course has been designed for use by national and international institutions providing technical support to CBOs and NGOs in English-speaking Africa

This booklet looks at some of the questions that you may have about treatment, where you can go and what you have to do to get treatment if you or someone you know needs it. If covers basic information about HIV and AIDS, such as the immune system, opportunistic infections, CD4 tests and viral load. It provides information on anti-retroviral drugs, what they do, side effects, etc and when treatment is needed. It then covers the importance of adhering to drugs and provides a set of tips on how to take your drugs effectively. There are also charts which can be filled in to assist adherence. The AIDS Law Unit also launched a treatment literacy campaign to raise awareness and understanding about HIV/AIDS treatment as a human right. This has taken the form of the production and distribution of T-shirts, posters and booklets on access to treatment as well as the production of a series of radio programmes on access to treatment that will be broadcast on NBC radio

Family Health International has a series of comprehensive factsheets which offer information on many aspects of HIV/AIDS prevention, care and treatment and mitigation. In relation to care and treatment, titles include:
Care and support for HIV/AIDS: Building capacity
Safe and effective introduction of antiretroviral (ARV) drugs
Nutrition in comprehensive HIV care, treatment and support programmes
Treatment and Care Initiative

The Alliance is developing a set of fact sheets and participatory tools to support community engagement for antiretroviral (ARV) treatment. The aim is to provide NGO/CBO staff with tools and information to support people living with HIV and AIDS and their communities on ARV treatment. They are based on experience in supporting treatment programmes in several countries. Titles include
Fact sheet 01: HIV/AIDS and treatment
Fact sheet 02: ARV treatment
Fact Sheet 03: Counselling and testing
Fact sheet 04: Adherence
Fact sheet 05: Side effects
Fact sheet 06: Side effects detailed
Fact sheet 08: Food for people on treatment
Fact sheet 12: Stigma
Fact sheet 13: Living with a chronic condition
Fact sheet 18: Symptom control

ITPC provides detailed information on antiretroviral drugs. There are three different types of fact sheets for each of the following four medications: AZT (retrovir), Nevirapine (Viramune), Nelfinavir (Viracept), 3TC (Epivir). The fact sheets are evidence-based, citing the studies that have been done on a specific drug. They are a short summary and are in a question-and-answer style. They answer commonly asked questions such as: Why am I given this medication? How do I take it? What do I do if I forget a dose? What are the side effects? Can it be taken with other medications? Can I drink alcohol or use street drugs? Can it be taken if I am pregnant or breastfeeding? What other precautions should I be aware of? The factsheets have a range of levels of technical language and make a variety of assumptions about pre-existing knowledge. They also provide information on dosing combinations and schedule sheet for all currently available medications

i-Base produce a range of materials relating to HIV/AIDS and treatment literacy. One example is a small handbook based on the i-Based Introduction to Combination Therapy that focuses on the four main recommendations in the latest WHO treatment guidelines. It also comments on how HIV is treated in different countries and is designed to be adapted for different settings. Several countries such as Uganda, Slovakia and Russia have already produced their own adapted versions. Titles include:
Introduction to combination therapy
Avoiding & managing side effects
Changing treatment
HIV, pregnancy & women's health
Generic treatment booklet

The Treatment Action Campaign (TAC) campaigns for greater access to HIV treatment for all South Africans, by raising public awareness and understanding about issues surrounding the availability, affordability and use of HIV treatments. It recognises the importance of treatment literacy and has produced a series of booklets, posters and factsheets on treatment aiming to encourage treatment literacy in the general population. A TAC publication "HIV in our lives" is a book of information sheets for clinics. There are opportunistic infections posters available in five different languages, nutrition fact sheets and short guides on a range of treatment issues such as treating opportunistic infections, pregnancy and HIV/AIDS, mother to child transmission of HIV/AIDS, and TB and HIV/AIDS. They can be found on the treatment literacy section of their website

Websites

This is an an easy to understand, non-technical website providing information about anti-retroviral treatment for AIDS for health care professionals and HIV positive people. There are clear guides to combination therapy, changing treatment, managing side effects and women's health. There is a regular HIV treatment bulletin that gives a technical review of latest treatment research and trials and news relating to clinical management of HIV. It also provides information on education and training on meetings, materials, specialist training and networks for HIV positive people and community advocates in the UK and abroad. HIV i-Base is an HIV-positive led activist group

PATAM is a social movement of individuals and organisations dedicated to mobilising communities, political leaders and all sectors to ensure access to antiretroviral (ARV) treatment, as a fundamental part of comprehensive care for all people with HIV/AIDS in Africa. The PATAM was created in response to the unacceptable situation where the greatest number of people living with HIV/AIDS in the world today are located on the African continent but do not have sufficient access to lifesaving medications. The site contains useful information on HIV and AIDS, advocacy strategies, and resources. It also provides links to information on treatment response strategies, treatment literacy and drug pricing

The Treatment Action Campaign (TAC) has since 1998 been campaigning for greater access to HIV treatment for all South Africans, by raising public awareness and understanding about issues surrounding the availability, affordability and use of HIV treatments. It campaigns for equitable access to affordable treatment for all people with HIV/AIDS and supports the prevention and elimination of all new HIV infections. It promotes and sponsors legislation to ensure equal access to social services for and equal treatment of all people with HIV/AIDS. It challenges by means of litigation, lobbying, advocacy and all forms of legitimate social mobilisation, against any barrier or obstacle, including unfair discrimination that limits access to treatment for HIV/AIDS in the private and public sector. It educates, promotes and develops an understanding and commitment within all communities of developments in HIV/AIDS treatment. It campaigns for access to affordable and quality health care for all people in South Africa. It trains and develops a representative and effective leadership of people living with HIV/AIDS on the basis of equality and non-discrimination irrespective of race, gender, sexual orientation, disability, religion, sex, socio-economic status, nationality, marital status or any other ground. It campaigns for an effective regional and global network comprising of organisations with similar aims and objectives